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A new, inspiring booklet, on living with mets.

24 REPLIES 24
SP0
Member

Re: A new, inspiring booklet, on living with mets.

Love this booklet..x
funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Catlady, That must be hard on both of you. I'm sure you worry so much about each other. Gosh How I wish they could stop this.

Jo_BCC
Member

Re: A new, inspiring booklet, on living with mets.

Hi all

 

Just thought I'd pop in here and advertise out Secondary Live Chat service for any of you with mets that haven't tried live chat.  The session runs each Tuesday evening for an hour 8.30 pm - 9.30pm, it is hosted by a nurse who can answer your questions and a moderator who just oversees the technical side of things.  The regular users of secondary live chat are a wonderful support to one another and welcome new users openly.  These are the people who understand exactly what it is like to be dealing with a secondary diagnosis and have a wealth of experience and knowleged between them.

 

I must point out though, at the moment it isn't possible to use live chat from a tablet/ipad as the system we are currently using is getting outdated, unfortunately you have to use a laptop/desktop, but we are working on a more modern system.  If you are interested in trying secondary live chat or indeed our general live chat (Thursdays 8.30 - 9.30pm) just follow the link below.

 

http://www.breastcancercare.org.uk/community/chat

 

Take care all,

Jo, Moderator

2catlady
Member

Re: A new, inspiring booklet, on living with mets.

Oh funny face,that's such a lot for you to deal with. Sending you huge hugs. My sister has just been diagnosed with primary,myself I was diagnosed with primary and bone mets at same time last year,and now I have mets in liver and lungs.
Sending you huge hugs across the pond,Helen xxxxx
funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Thanks Helen! My ex sister in law has now hopped in the boat with me. She has liver mets. We also have a male friend who climbed in. He has lung mets. His wife had breast cancer too, but doesn't have mets. Just a little tidbit, the husband and wife were born on the same day in the same hospital. I just can't get over the fact that I have known all these people for such along time and we all got breast cancer and mets. It's not like we met in a support group. My ex sister in law I've known 42 years and the male friend 30. Crazy!

2catlady
Member

Re: A new, inspiring booklet, on living with mets.

So sorry,to hear about your loss funny face. This must have been a massive blow to you to lose your friend so quickly to this awful disease .
I'm sending you massive hugs,Helen xxxxxxxxxxxxx
funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Now it changed it to Beg. I give up Bev!

funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Sorry Beg my kindle changed your name to Ben!

funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Beb how long have you had lung mets? I have been lucky so far. I started with Lupron injections in Nov 05. I am ER +, PR - and HER 2 -. The lupron injections were to shut down my ovaries. This didn't work so I went on abraxane/ avastin combo. This treatment was harsh on me so my onc stopped it and gave me a break.I can go back to this combo if I want because it was still  working. He then gave me a break but After 9 months I became symptomatic so he out me on voinorelbine (navelbine). This worked for 5 years and I became shirt of breath and my upper and middle lobe of right lung collapsed because a tumor was closing off my brohncus. They chose to zap this tumor.The radiation gave me pneumonitis and my heart started racing. This landed me in the hospital. I was sent home on O2 and steroids. Told my lung wouldn't reinflate. I started xeloda. I used my incentive spirometer religously and my lung reinflated. I have been in xeloda 2 1/2 years and find out in Oct if it has failed . I hope you too can do  as well. Wishing you the best! FF

Bevlaar
Member

Re: A new, inspiring booklet, on living with mets.

So sorry funny face to hear of the heartbreaking loss of your friend. Its always hard for us all I think hearing news like this. None of us want to be in this horrendous place...bug I have to say its so uplifting to hear that you're here after 9 years especially with lung mets like me. Ive been scared witless that being in lung wasnt good news....so knowing this just gives me more hope for the future.....thanks so much and good luck to us all 💖
Love and hugz...bev xxxx
funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Just going through a rough patch of losing my best friend. She had been my friend for about 15 years and was my best supporter. I had my original bc 19 years ago I've had lung mets for 9 years. Barb had her original Breast cancer 4 years ago and is gone. I just never would have thought one of my friends would join me in this journey and be gone so fast.

bc-lass
Member

Re: A new, inspiring booklet, on living with mets.

Hope everything ok funnyface x
funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Having a tough time with emotions! My boat has been rocking back and forth!

funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Miss chatting Belinda!

belinda
Member

Re: A new, inspiring booklet, on living with mets.

I have saved it too. The older booklet is still online, it is quite a few years old now, published in 2002, but a good read, here,
http://www.bcna.org.au/sites/default/files/messages_advanced_cancer_0.pdf
Always good to read these stories. 🙂
Dear funnyface I keep meaning to email you...I will over the weekend. Wondered if you were ok, hope so. X
Bevlaar
Member

Re: A new, inspiring booklet, on living with mets.

Yes I've saved this in my downloads to keep it xxx
2catlady
Member

Re: A new, inspiring booklet, on living with mets.

Belinda,I hope this thread doesn't get lost. It's a great read and gives you hope if you have just been diagnosed or hope when you are having a down day for anyone further along . Thank you xxxxxxxxx
funnyface
Community Champion

Re: A new, inspiring booklet, on living with mets.

Nice read Belinda!

belinda
Member

Re: A new, inspiring booklet, on living with mets.

Posted before I should have added yes I like the down to earth feel of the stories.
belinda
Member

Re: A new, inspiring booklet, on living with mets.

Hi Janet and Bev, glad you found the booklet helpful. 🙂
Jam
Member

Re: A new, inspiring booklet, on living with mets.

Thanks Belinda it's down to earth and real. I follow you and the other ladies on bone mets link and feel the support you give on there thanks for that too. Janet x
Bevlaar
Member

Re: A new, inspiring booklet, on living with mets.

Thanks very much for this Belinda!  You hear of so many women living longer fulfilling lives now and we all just want to be one of them. One lady in the booklet is 19 years on....amazing!!

Heres to continued good health to all of us lovely ladies too and many long and happy years ahead  ♥♥♥

Love bev  xxxxx

belinda
Member

Re: A new, inspiring booklet, on living with mets.

I'm so pleased you also found this a good read Stillhere. 🙂
Stillhere
Member

Re: A new, inspiring booklet, on living with mets.

I have just read this and have found it very uplifting and inspiring! I haven't wanted to immerse myself in forums as I cope better with a 'head in sand' approach and have joined BCC with some misgivings, especially as I have technically 'regionally advanced' BC, but I feel very comforted by many ladies' experiences. So thank you!! To everyone in this club, bless you.
belinda
Member

A new, inspiring booklet, on living with mets.

I have just found this (newer) PDF from Breast Cancer Network Australia, women living with their mets. Really recommend reading, inspiring women.
http://www.bcna.org.au/sites/default/files/hh_messageofhope.pdf